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"Confusional Migraine"

Posted by PixieDust's Mom on Dec-16-06 at 07:34 AM
Hello. My 16-year-old daughter has suffered from migraines for several years. She blacked out twice this week in school and although she wasn't unconscious for more than a few seconds, she was disoriented afterwards for 4-5 hours each time. The first episode was associated with a migraine. The second was not. She's being tested to have all sorts of things ruled out, but the neurologist suspects confusional migraines. Has anyone here had experience with this variant? Thank you.

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Messages in this discussion
"RE: Confusional Migraine"
Posted by thetsarisa on Dec-18-06 at 03:03 AM
No I have not heard of this but I heard of losing consciousness because of migraine. I wonder why your daughter's dr ruled out migraine after the last time?

Perhaps you can re-post your post on the more frequented Migraine Discusion forum? I think you will have more replies there.

Risa


I don't have an attitude problem. You have a perception problem.


"RE: Confusional Migraine"
Posted by Johndontcry on Dec-20-06 at 01:48 PM
Hey, i recently had a migrain where i blacked out... after about 4 years of them it just happened :S told doctor he said it was something to do with the amount of pain i was in :S

"RE: Confusional Migraine"
Posted by PixieDust's Mom on Dec-21-06 at 05:14 AM
Thanks for your replies, Risa and Johndontcry. To clarify, the doctor didn't rule out migraines after the 2nd episode. My daughter just didn't have a headache after the 2nd one. The scariest part of the whole thing is how disoriented and weak she was for hours after the episode. Connie

"RE: Confusional Migraine"
Posted by stormagnet on Dec-22-06 at 02:40 AM
Hello, PixieDust's Mom- I was recently diagnosed with acute confusional migraine- that's actually what led me to this site, as I was poking around Google for more information. From what I understand so far, and from my own experience, though the condition itself is fairy unusual, your daughter's reaction sounds fairly typical.

In my own experience, whether or not the migraine comes with a headache or not varies- the consistent effect is the aura (in my case, feeling tired, then fuzzy around the edges, then the "tunnel effect",)- after which there may or may not be a loss of consciousness- either syncope or a sort of "fading in and out", the aftermath of which is the prolonged confusion- even trouble speaking or remembering- that gives the migraine its name. Even after the confusion wears off, it's not unusual to feel exhausted, weak, run down, nauseous, have trouble concentrating, and have a generally cruddy time of it for anywhere from a few hours to a few days.

In a nutshell, these migraines have dramatic and very scary symptoms, which are almost identical to having a stroke. From what I've read so far, it sounds like the mechanism might be similar- though it's only observable if someone is taking very detailed tests right at the moment of the migraine. My sketchy understanding is that "Cerebral hypoperfusion" is thought to play a big role, and that because of this, the vessels in the brain start to spasm in an attempt to get more blood delivered to them- which is what happens in a stroke because of a blocked vessel.

In my case, my attacks are concurrent with a problem with neurocardiogenic syncope, (ie vasovagal), which also is caused by a lack of blood flow to the brain- something I have had a bad habit of exacerbating by propping myself up to prevent the melodramatic collapse- (very uncool, draws a lot of embarrassing attention, plus bruises, etc.) Rather than going and lying down, I generally try to sort of "walk it off"- with ACM as the consequence- or, at least, that's the going theory.

This is an unusual case, though- I'm 24, but ACM is usually a problem in childhood and adolescence, and outgrown by adulthood- usually replaced by "common" or "classic" migraines- (yeah- oh boy.) Other than being scary, melodramatic, painful, and generally a PITA, they sound mostly benign. Being pretty rare, though, you may have trouble finding much support for them. (Having an onset as an adult has won me the title "Mystery Girl," so there's something

A few webpages that I found informative are:
http://professionals.epilepsy.com/page/migraine_variants.html
http://www.emedicinehealth.com/migraine_headache_in_children/article_em.htm#Migraine%20Headache%20in%20Children%20Overview
(particlarly page 3)
http://www.emedicine.com/neuro/topic494.htm (a bit more technical)

Though the first of those pages' wording implies that the ACM might be a sub-type of basilar migraines, (which are somewhat less benign,) I have no idea if that's just my reading or what- I'm still looking into it. But the vast majority of what I've seen so far is reassuring.

In my case, the first line of treatment has been to go after the NCS first, but while anti-migraine drugs haven't been tested much for this (again, too rare,) it might be worth a shot. Hands down, though, the best treatment is to go somewhere cool, dark, and quiet and try to sleep it off- given the problems with fatigue and "fading", falling asleep after an attack has never been a problem for me- only finding a place to do it! Since your daughter sounds like she's still in high school, the nurse's office is a good bet.

I'd also recommend getting a medic alert bracelet, and carrying a note to explain what's going on- I usually can't speak during an episode, and end up getting whisked away to the ER before I recover enough to explain. Melodramatic, embarrassing, AND expensive!

Hope this helps!
stormagnet


"RE: Confusional Migraine"
Posted by thetsarisa on Dec-23-06 at 02:51 PM
There is also such thing as acephalgic migraine or silent migraine which means that this type of Migraine does not have pain episode, but all or some of all the other symptoms.
Hope that helps, too.

Risa


I don't have an attitude problem. You have a perception problem.


"RE: Confusional Migraine"
Posted by PixieDust's Mom on Dec-26-06 at 09:46 AM
Hi Stormagnet-

Thanks for your reply. I recognize many of the things you mentioned as exactly what my daughter is experiencing.

The episodes are certainly melodramatic. I have to admit that after the first episode, I was annoyed when she couldn't tell me what had happened or how she felt. I didn't understand what was going on and put her to bed for an hour to sleep the migraine off before taking her to the doctor. Then the very next day, the school called me to say that she'd collapsed again. I was on my way to get her when I heard the sirens. Because her eyes were open but she was nonresponsive, they decided to call 911 after they called me. I don't blame them - in fact I'm grateful - but picture an ambulance and fire truck and sobbing teenagers. Melodramatic indeed.

The doctors in ER thought she'd seizured - but luckily we were referred to an excellent child neurology team in Atlanta - and the more I learn, the more I agree with their inital assessment that both episodes were confusional migraines. The 2nd one was more intense than the first - in part because I didn't see the first episode for what it was - and in part because she was in the emergency room. The scariest part during the 2nd episode was that for the first half hour or so, she wasn't able to answer the simplest questions. After that, with a great deal of thought, she began to be able to come up with her name or part of her birthday or address - but mostly she just stared off into space. After another hour or so, answering questions got a little easier. And another few hours, her color returned to normal and her eyes looked right again - and she was just exhausted for several days afterwards.

Thank you for mentioning that you experience tiredness, feeling fuzzy, and the tunnel effect before an episode. I'm starting to believe that a confused/spacey state may signal my daughter's migraines. I'm not sure if you'd call it an aura or not (she does have a visual aura before her worst migraines - a big spot in front of each eye that blocks out most of her vision.) She seemed very "spacey" on Christmas Eve day - and then late that night had a migraine that woke her up. The same sort of thing happened before her first collapse.

Interestingly, like you, my daughter has been diagnosed with vasogal syncope. She has low blood pressure - which no one has ever seen as a problem before now. But in her case - the top number which varies from 90 to 100 - is causing some problems - and the systems in her body - including her brain - aren't gettin enough blood flow. She thought it was normal to get dizzy every time she stands up - and carefully explained to the neurologist that it's called a "headrush". We saw an excellent cardiologist a few days ago and she's going to take salt tablets in the morning and evening for a month. If we can get her blood pressure up, we can avoid medicating her.

I'm sorry that you're going through this- and I hope that you have a good support system. I'm very glad to have met you here - especially since you and my daughter seem to have something very similar going on. If I can help you in any way, please let me know.

Connie


"RE: Confusional Migraine"
Posted by stormagnet on Jan-02-07 at 05:28 PM
LAST EDITED ON Jan-02-07 AT 05:35 PM (CMT)

Any help I can be of to you and your daughter is a help to me, too Though I'm sorry you're both going through all this, I'll admit, it's sort of comforting to find someone else who has the same problem. Who knows- maybe somebody else with ACM will be Googling around and end up here, too. We zebras have to stick together!

I wonder how much research has gone into the link between vasovagal syncopy and confusional migraine... Not very much, I'm guessing, since it is so rare, but I wonder if it would do our doctors any good to be able to compare notes on this. My neurologists contact information is at:
http://www.nwhospital.org/physicians/md_detail.asp?mdid=1587
- might be worth mentioning it to your daughter's docs

Given the strong resemblance between your daughter's condition and my own, I wonder if she might have a similar underlying condition. In my case, my low blood pressure is caused by venous pooling, which in turn is caused by a kind of hereditary connective tissue disorder that messes with my collagen, making my veins extra stretchy. There's some disagreement as to whether to classify it as Hypermobility Syndrome, or Hypermobility-type Ehlers-Danlos Syndrome, or whether those are the same thing- but in either case, you might want to take a look at:

http://www.hypermobility.org/beighton.php
http://www.genetests.org/query?dz=eds3


"RE: Confusional Migraine"
Posted by PixieDust's Mom on Jan-03-07 at 06:41 AM
Hey Stormagnet-
I sent you an email. Let me know if it doesn't come through.
Connie

"RE: Confusional Migraine"
Posted by stormagnet on Jan-03-07 at 11:28 AM
Got it just fine- just haven't had time to reply yet (Winter Quarter starts today, so I've been AFK getting all my poor neglected notes together, bookstore ran out of textbooks, etc.)

"RE: Confusional Migraine"
Posted by arenjohnson on Jan-30-07 at 12:40 PM
OMG! I am so glad I came across this! I have been searching for days trying to find someone else w/confusional migraines. As a teenager I had migrianes w/aura's. I'm 29 now & haven't had migraines in years. In December of last year I had what was originally thought to be a complex partial seizure. With that one I "lost" about 10 minutes of time & was extremely confused & tired afterwards. The really scary part was I was driving at the time w/my 3 year old daughter in the car. (I didn't wreck but I did end up miles from my destination) I had another one Jan 17 but I didn't have the amnesia with that one. I had an ambulatory EEG which showed an abnormal spike so now I'm waiting to have an in-patient video EEG. I also had MRI & CT, both of which were normal. My neuro is now leaning toward confusional migraine instead of seizures. On both occurances, I had a slight headache, but nothing compared to what I've had in the past. Anyway, I said all of that to say I am so excited to finally find someone else who is having the same, strange, symptoms.

"RE: Confusional Migraine"
Posted by PixieDust's Mom on Feb-07-07 at 08:45 PM
I'm glad you came here too. I think we can all help each other. Stormagnet, in particular, has been a wonderful help to me. Sounds like you've had a scary time of it - and its helpful to know that there are other people who have experienced this. Things are very hectic here right now, so I just wanted to take a moment to welcome you - and let you know that I'll check back in a few days to see how you're doing and if there's any particular thing you'd like to discuss. Take care.

"RE: Confusional Migraine"
Posted by arenjohnson on Feb-15-07 at 11:38 AM
Thank you for the reply. It has been a frustrating few months since they don't really know what's going on. Like I said before, the neuro is leaning toward confusional migraines, but I can't find any information out there! I am glad I found y'all. (Yes, i'm from the south lol)

"RE: Confusional Migraine"
Posted by PixieDust's Mom on Feb-17-07 at 12:59 PM
Hello from Atlanta, ArenJohnson. : )

Although you may already have found them all, here are some links to sites that I found to be at least somewhat helpful.

http://professionals.epilepsy.com/page/migraine_variants.html
http://professionals.epilepsy.com/wi/print_section.php?section=migraine
http://www.acep.org/webportal/MemberCenter/Periodicals/Medical+News/pediatrics/default.htm?newsid=0c025100
http://www.users.drew.edu/jstrain/Rothner%20b.pdf

My daughter is going for a 2nd EEG on Tuesday. The neurology team she sees is divided over a diagnosis of seizures or confusional migraines. I wonder if we'll ever know what happened to her in December. What really matters, though, is that she hasn't had another significant episode of confusion since then. Realizing that she didn't know who I was (or couldn't say) was one of the worst moments of my life. Luckily, she doesn't remember it - and manages to have some fun by pretending to forget me from time to time.
Stay well.
Connie


"RE: Confusional Migraine"
Posted by arenjohnson on Feb-17-07 at 06:51 PM
I'm glad she hasn't had any more episodes! It's scary enough to have it happen to me, I can't imagine what it would be like to see my daughter have one. Thank you for the links. Are you a member of epilepsy.com also with the username pixiedust? I saw some posts on there with that name & wondered if it was you too.

"RE: Confusional Migraine"
Posted by arenjohnson on Feb-17-07 at 07:07 PM
I just re-read the posts & saw your daughter & stormagnet both have low blood pressure. I have always had low blood pressure. Mine is usually around 90/65. It's never caused me any problems in the past other than being light-headed at times if I stand up too fast. I wonder if there is a connection???
BTW - my name is Amber

"RE: Confusional Migraine"
Posted by sandjward on May-22-08 at 12:48 PM
LAST EDITED ON May-22-08 AT 12:52 PM (CMT)

We have just experienced similiar episodes that you folks have been discussing. Our 16 yr old daughter has had many attacks or migraines in the last 6-8 weeks. Symptoms: fatique, black out, rolling of eyes, numbness in legs, difficulty breathing, slurred speech, unable to speak. She has been rushed to the ER twice by ambulance and all symptoms go away after an hour or so. This has been so frustrating as the doctors believe the episodes are panic attacks. They are not panic attacks as she is the most non-complacent daughter that we have. An MRI and 2 EEG's have confirmed no seizure activity or brain abnormality.A recent paediatic neorolgist has diagnosed her with confusional migraines. This is a diagnosis we were not aware of. She is currently home attempting to relearn how to walk again as she can only move around by running on her tip toes. She is slowly regaining her normal walk. The episodes would last for 30 to 45 minuttes witha variation of the things mentioned above.

Can someone give us some reassurance that their child is doing OK TODAY. The doctor is going to put her on some anti migraine blocking medication as soon as she becomes weened off of the anti seizure meds. I believe the new drug is called Anmityrptyline.

Steve


"RE: Confusional Migraine"
Posted by somebodysmom on Jun-02-08 at 10:28 PM
It looks like there's only been one post this year about confusional migraines. Are things working for people?
Last fall at age 16, my son forgot an entire weekend, then began getting headaches. For a couple of months, it was just a constant low grade headache. Then twice after basketball practice, his headache and dizziness were so bad he couldn't drive home and he was also vomiting. Afterwards he would just sleep. When he woke up, he remembered nothing from that day. He continued to have bouts of memory loss and times when he was extremely "spacey". His MRI & EEG were normal. The neurologist said he didn't know what else to do and said to send him to a psychiatrist. The GP put him on Pamelor. He didn't notice any difference. They tried putting him on medicine for bi-polar disorder, but that made him feel miserable and made him depressed with no improvement in his memory. When we finally got in to see a pediatric neurologist, he immediately diagnosed him with confusional migraines. So here we are. He continues to have memory loss. I'm wondering if anyone has found a treatment that works for the confusional migraines. I think he needs to take something daily since he really has no warning of a migraine coming on or if he does, he cannot remember it.
I was also wondering if anyone has any more info about migraines and a connection to vasovagal syncopy or low blood pressure. I read a little about both in previous posts. Thanks so much.

"RE: Confusional Migraine"
Posted by sweeet-gorgeous-sarah on May-05-07 at 00:50 AM
hey,
well I am 15 going on 16 and I have dealt with daily migraines for 4 years now. I was hospitalized for seven days and it actually worked. For the most part anyway. But the medication I am on causes fibrosis of all my major organs so I have to take a month off of all the medications for two months out of the year (so that’s every 6 months) and that month is going to be hell, because even when I am late on my medication I have an instant migraine. So I am not looking forward to that. I’ve been forced to drop out of school because I can’t keep up with work but I am hoping to get back next year. I am keeping my fingers crossed. I have also lost all of my friends due to the migraines because they don’t understand how a migraine can make you not be able to get out of bed in the morning and just do basic day to day things that we all have to do. Most of them think that I am doing it for attention or they think I am weird. But this hospital I went to in Ann Arbor Michigan was great. People come there from all over the world and even from different countries. It’s Called Michigan Head Pain And Neurological Institute. The hospital you stay at is Chelsea Hospital which is also in Michigan. They have there own Migraine wing and your surrounded by many doctors that suffer from migraines and the other people that are there totally know what your going threw. And there’s a hotel right next to the wing that u can see out of the windows where your parents can stay for next to nothing if your in there for migraines. It was a very positive place.
I also learned so much there that I would have ever known. Before this place I found no relief and got addicted to Vic Odin because I needed something for the pain. Here is the address you should definitely check it out it can change your life.
3120 Professional Drive
Ann Arbor, MI 48104
There phone number is 734-677-6000

GOOD LUCK!!!


"RE: Confusional Migraine"
Posted by deb26 on Jun-09-08 at 06:36 AM
While my daughter did not have confusional migraines she did miss so much school we ended up home schooling. If htere is a community college near by u might want to try a class there or a online class to keep up with ur schooling. What finally helped my daughter was accupunture theres no side effects! She had had bad reactions to many of the script she was given. You have to find a really good doctor for the accupunture they are not all the same

hang in there
Deb


"Confusional Migraines - two in a week."
Posted by NolafromPerth on Oct-20-08 at 07:49 AM
I have just been diagnosed having confusional migraines. This actually came as a relief in the end to me as the experience of having this (turn) as I called it, was quiet frightening to me and I am 38 years old. I had know idea what was happening, I have always been healthy and this was very different to any experience I have had before. The first on 9th & the second on the 15th of October, now that I know from the neurologist that it will not harm me I'm feeling much better. Basically I felt pins and Needles feeling in my toes (left foot both times) and then in worked its way to my whole foot and then up to my bottom. Then it all went numb feeling, weird feeling. I could not walk on my leg, it was jelly or it didn’t feel like it was mine, after a few minutes this feelling would like jump across to my hand, fingers and up my arm, my fingers felt distorted crumbled up. It was hard to open that hand out properly. The last was the inside of the left side of my nose, down to my top lip in my mouth to the bottom on my chin. I was stuttering and could not talk properly. This is very confusing and I was very worried about my body. I had a 10-minute bath. When the ambulance arrived I was sick. They checked me over and decided to take me in for observation as I was Hypo, After about 20 minutes I had the worst headache I think I have had. Even after Panadol forte it still throbbed. That was how the first felt. The second was more intense and lasted longer. I was just waiting in line as I had an appointment for an ultrasound. My toes on my left foot started to go pins and needles again. This made me very nervous and this strange warm feeling at the back of my head, slight dizziness. Then my foot went numb, the man called for me, I was trying to walk to him but found that my left foot would not work. They got a wheel chair, he left me sitting in it for a moment. Up my leg again pins and needles sort of feeling then the numbish. Then my Arm, if I raised my arm it would fall all over the place, I could not control it. My fingers were distorted. I felt anxiety, my breathing was not the same. I kept jabbering, then at one point I could not talk, I wanted to but felt really drugged, it felt dark, I was disoriented, my daughter was so worried. I can say you need help when this happens if you are out of your home. I would not been able to drive at all. I went back to emergency again, not long after arriving had the worst headache again and the painkillers just did not seem to help for a while, then vomited. I was able to leave a few hours later. The next day I was still a tiny disoriented but able to do the normal things I do. I am a bookkeeper and have been involved in businesses most of my life.
I hope this helps anyone out there with these kinds of signs. I am not so worried anymore, but I do have to keep my life calm as possible as stress seems to help bring it on.